Nearly everyone forgets where they left the car keys or the name of someone they met just minutes ago. For most of us, such absentmindedness is common and not a concern. Dementia, however, is a completely different matter. Dementia is characterized by serious cognitive impairment, such as significant memory loss, confusion, and behavioral changes.
Alzheimer's disease which affects 5.4 million Americans, is the most common type of dementia. While the majority of people with Alzheimer’s disease are age 65 and older, up to 5 percent begin to experience symptoms in their 50s or even their 40s. This is known as early-onset Alzheimer’s, and is becoming more prevalent.
Though Alzheimer’s effects may be mild at first, they can become progressively more severe as patients lose the ability to find their way around their neighborhoods, navigate the inside of their homes or even recognize loved ones. In the later stages of the disease, patients may be unable to complete basic tasks, such as cooking, dressing and caring for themselves. At this point, they may need round-the-clock care to ensure that they are getting proper nutrition, taking care of their personal hygiene and not endangering themselves.
Nearly 15 million Americans provide unpaid care for persons with Alzheimer’s disease or other types of dementia. The challenges of caring for someone with dementia may feel overwhelming for family members and friends. For the caregiver, frustration, helplessness, guilt and depression may result from being unable to communicate with a loved one or understand what they want or need. Behavioral issues such as agitation, belligerence or violent behavior can be extremely difficult to manage.
If the patient does not have a professional caregiver, family members and friends have the added stress of caring for their own families, going to work, and meeting their own personal needs, as well as concerns about how to afford the costs of care. For caregivers who are very close to the patient, such as spouses, it can often be difficult to see the changes in their loved one and accept that their condition will not improve. Given all of these stressors, the emotional and physical toll on caregivers can be significant.
As a therapist who works closely with caregivers, I offer seminars that address many of the issues caregivers face, help them learn skills to cope both physically and emotionally, and provide information and resources that can ease the daily challenges for both caregiver and patient.
Once family members begin to notice behavioral or cognitive changes with their loved one, they often don’t know what to do or where to turn for help. The first step is a medical assessment, usually by a neurologist, who can make an official diagnosis and provide information and guidance to the family.
A psychiatrist can provide valuable insight on behavioral issues to help caregivers understand the changes that may occur and how to best manage them. Psychiatrists may also address treatment options, including medication to slow the progress of the disease. Other medications can help control agitation and irritability, while non-medical treatments such as creating structured routine can also help the patient feel better — which, in turn, benefits the caregiver.
In addition to helping caregivers develop skills to care for patients with dementia, it is especially important for them to take care of themselves. This includes making sure they are eating well, exercising, getting enough sleep, and taking breaks from their caregiving responsibilities to prevent “burn out.” Techniques such as mindfulness-based stress reduction can help caregivers be aware of and mitigate their stress.
Inevitable emotional struggles with guilt, frustration and depression must be addressed. Caregivers need to know that these feelings are normal and common, and learn healthy ways to deal with them. When caregivers are able to overcome negative emotions and more effectively manage stress, both they and their patients benefit.
Finally, legal and financial professionals can help caregivers navigate the often confusing issues of medical expenses and health care directives.
Join Debra Lobatz, MFT, a licensed marriage and family therapist, on Saturday, April 6, 9 a.m. to 12:30 p.m., for a free conference designed specifically for caregivers. Professionals will cover topics including neurological and psychological perspectives and legal and financial considerations. For more information or to register, call 1-800-SCRIPPS.